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A wife and her worries

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User
Posted 25 May 2014 at 15:15
My husband was diagnosed recently and is having his surgery next week. I'd considered myself to be coping with the whole thing really well, he's very positive. All of a sudden now this is real, and our lives will change dramatically. We've had no option but to go straight to surgery. The realisation of what this will mean to us as a couple is now the forefront of my mind. Nerve sparing is not a consideration for him. I am 13 years younger than him and we've always enjoyed a healthy sex life. He jokes about it but I know he is worried too. I've read all the research there is to read but can anyone give me a step by step as to how this affected their sex life and probably more importantly their relationship on an emotional level. Drs have said 30% chance of Viagra working. Any experiences with the injections, pumps, or any other treatment would be most appreciated, then I would know what we would dealing with in the future?? Thanks in advance.
User
Posted 25 May 2014 at 21:07
Hi Julie, i really feel for you. My husband is 66 and I'm 60. I've been with him since I was 17 and we have been married for 41 years. The way I look at it is like this, he is my soul mate I am just so grateful that I have him with me. I am just eternally grateful that his cancer was detected at a very early stage. Sex is important but it's not the be all and end all......just my honest opinion. xxx
User
Posted 25 May 2014 at 21:08
Sorry I don't know where I got the Julie from lol, sorry Tootie x
User
Posted 26 May 2014 at 10:35

Hi Tooti,

My partner was diagnosed with advanced disease last May. I was aware that this would have an impact on our very enjoyable sex life but it was impossible to be prepared for the extent of the effect or the emotional side of this. Looking back, I wish there had been more support over this aspect of the diagnosis but there is so much to take in you can't do it all.

Neil started to lose erections very quickly after hormone therapy was started. Cialis helped a little but as he became, not surprisingly, preoccupied with the discomfort a very enlarged prostate caused, he increasingly could not contemplate sex. To say I have cried, raged, blamed, thought of having an affair at some stage over the last year is an understatement as I have missed the warmth and release of our pre-diagnosis relationship. Yes, you have to be prepared for changes and to adapt and it is not easy, I would be misleading you if I was to say otherwise. However, there are men on the forum who have maintained a sex life through various chemical and mechanical means so all is not lost, like everything PCa, it's very individual.

We have not had sex for about ten months  but if you read our profile it's not surprising. One poster on this topic a while back commented that sex goes off the agenda pretty quickly, that's what I have found and I have sort of adjusted to our relationship being different. No consolation for the times you find yourself grieving like mad for what is gone. I try to imagine what it is like for Neil as well. The book I recommend to everyone in this situation is 'Better Than Ever' by Bernie Zilbergeld, cheap on Amazon. Most compassionate, amazing book about people adapting to changes in their health and sexual relationships. I ought to re-read it again. Well, a year on, things aren't good, but I have not left Neil or had an affair, maybe I'm learning !

You will go through some very dark days but you will find things that help you hold it together, Don't hold back if you need to be emotional if that is right for you. I hope your husband' s treatment is successful and that you see some light at the end of the tunnel. You will find lots of support on the forum,

 

Regards, Fiona.

User
Posted 26 May 2014 at 17:36
Fiona, you are doing great - I know that place where you find yourself and it is not always easy to keep holding on. Stick with it my friend x
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 15 Jun 2014 at 22:54
Hi

My wife and I know how you must be feeling. I had robotic RP over two years ago. After a difficult surgery with complications I made a very good recovery. We have always had an excellent sex life and it is still great, but different. We decided to use a penis pump which requires a lot of patience and developing the right techniques, both for achieving an erection and having sex. Having been using the pump for sometime now I can provide a number of useful hints if you need. All I would say now is that using a pump has many advantages, particularly it guarantees excellent erection for us. I am 75 and my wife is 70!

Do not lose heart, with loving support from you, your sex life need not suffer.

 'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.'                    Richard Feynman (1918-1988) Nobel Prize laureate

 

 

User
Posted 09 Oct 2014 at 15:09
Hi Tootie,

My husband was diagnosed last July with advanced prostate cancer and was immediately put on hormone therapy. He was then asked to consider taking part in a clinical drug trial. It was a randomised trial so we were unsure as to which treatment he would be put on. He is now on 2 different hormone treatments. They seem to be working well and his PSA level is now 0.04 compared to 105 when first diagnosed over a year ago. He was told that he would lose his libido but we had no idea exactly how much it would affect him. He has absolutely no desire for sex at all. We have been happily married for over 42 years and I really miss the intimacy. We have had lots of tearful conversations and I did even consider having an affair. We weren't offered much support regarding this problem but I researched it on the Internet and my husband went to see our GP who was unhelpful to say the least! His Urologist eventually put him in touch with the Rep for Soma vacuum pumps. He was excellent and came to the house to demonstrate the device. It was eventually prescribed by our GP on the NHS. It takes a while to get used to it and we are no longer able to have a 'quickie' any more! We tend to set aside a Sunday afternoon!! There are lots of different options depending on what treatment your husband has. I would say don't give up. Persevere like we did and I wish you both all the best for the future.

User
Posted 24 May 2015 at 11:59
This seems to be a thread from a year ago that got picked up and re-activated by someone other than Pam.

If you are out there Pam amd still looking for advice and support rest assured you can see it is still here for you.

Best wishes

Xx

Mo

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User
Posted 25 May 2014 at 17:54

Hi Tootie,

I can't answer your questions as my hubby has not had surgery, we were too far advanced but I just wanted to say welcome and obviously sorry that you have found your self here. You will get many helpful people here to give you advice .It may take a little while as we are using a new site, (old forum) and we are still feeling our way round. Trust me people will come along to help.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 25 May 2014 at 19:07
Hello Tooti. Like Julie I cannot offer much advice but wanted to welcome you.

I too am a few years younger than my husband and we have had the discussion regarding the future of our love life since it is likely to be affected by his brachytherapy due on 3rd June. I can only repeat what I told his consultant when he asked me how I felt.

I said that I would rather have John by my side even if treatment meant we no longer had a physical aspect to our relationship.

There are many members on here who can offer you advice and I too will read it in the hope that I can gain more information, but truthfully, for me, it will be what it will be. Not a lot of help to you though is it.Sorry

IT's hard to advise somebody else because not all of us will have the same needs, be the same age etc.

For us, we had already assumed that John's age (73) was a reason for the slowing down of his desire, and maybe it is.

Hang in there until somebody else more knowledgable comes along. ~I assure you they will. All the best Sandra

We can't control the winds - but we can adjust our sails
User
Posted 25 May 2014 at 21:07
Hi Julie, i really feel for you. My husband is 66 and I'm 60. I've been with him since I was 17 and we have been married for 41 years. The way I look at it is like this, he is my soul mate I am just so grateful that I have him with me. I am just eternally grateful that his cancer was detected at a very early stage. Sex is important but it's not the be all and end all......just my honest opinion. xxx
User
Posted 25 May 2014 at 21:08
Sorry I don't know where I got the Julie from lol, sorry Tootie x
User
Posted 26 May 2014 at 10:35

Hi Tooti,

My partner was diagnosed with advanced disease last May. I was aware that this would have an impact on our very enjoyable sex life but it was impossible to be prepared for the extent of the effect or the emotional side of this. Looking back, I wish there had been more support over this aspect of the diagnosis but there is so much to take in you can't do it all.

Neil started to lose erections very quickly after hormone therapy was started. Cialis helped a little but as he became, not surprisingly, preoccupied with the discomfort a very enlarged prostate caused, he increasingly could not contemplate sex. To say I have cried, raged, blamed, thought of having an affair at some stage over the last year is an understatement as I have missed the warmth and release of our pre-diagnosis relationship. Yes, you have to be prepared for changes and to adapt and it is not easy, I would be misleading you if I was to say otherwise. However, there are men on the forum who have maintained a sex life through various chemical and mechanical means so all is not lost, like everything PCa, it's very individual.

We have not had sex for about ten months  but if you read our profile it's not surprising. One poster on this topic a while back commented that sex goes off the agenda pretty quickly, that's what I have found and I have sort of adjusted to our relationship being different. No consolation for the times you find yourself grieving like mad for what is gone. I try to imagine what it is like for Neil as well. The book I recommend to everyone in this situation is 'Better Than Ever' by Bernie Zilbergeld, cheap on Amazon. Most compassionate, amazing book about people adapting to changes in their health and sexual relationships. I ought to re-read it again. Well, a year on, things aren't good, but I have not left Neil or had an affair, maybe I'm learning !

You will go through some very dark days but you will find things that help you hold it together, Don't hold back if you need to be emotional if that is right for you. I hope your husband' s treatment is successful and that you see some light at the end of the tunnel. You will find lots of support on the forum,

 

Regards, Fiona.

User
Posted 26 May 2014 at 11:02
Hi I have had RP and RT. I had nerve sparing but still struggling with ED. You say nerve sparing is not an option. You can always ask for a 2nd opinion on that ( sorry don't know your husbands grading). My consultant who is extremely experienced (over a 1000 of these ops) talked about their being two schools of thought ie some surgeons will take everything regardless, some will remove only what they feel needs removing.

Having said that if the nerves are removed there are things to help, you say you have done your research so probably aware of those things. Also an intimate loving relationship can take place without penetration, explore this, it can be fun and fulfilling being creative together. As someone once said there's more than one way to skin a cat

Bri

Edited by member 26 May 2014 at 11:03  | Reason: Not specified

User
Posted 26 May 2014 at 17:34
Tootie, because you have posed the same question in 3 different places you might find it hard to keep track of your replies. However, this thread will answer many of your worries I hope

http://community.prostatecanceruk.org/posts/t8542-intimacy#post8542

Lyn

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 26 May 2014 at 17:36
Fiona, you are doing great - I know that place where you find yourself and it is not always easy to keep holding on. Stick with it my friend x
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 26 May 2014 at 20:27

Deleted by Alison

Edited by member 01 Jun 2014 at 21:50  | Reason: Not specified

User
Posted 15 Jun 2014 at 22:54
Hi

My wife and I know how you must be feeling. I had robotic RP over two years ago. After a difficult surgery with complications I made a very good recovery. We have always had an excellent sex life and it is still great, but different. We decided to use a penis pump which requires a lot of patience and developing the right techniques, both for achieving an erection and having sex. Having been using the pump for sometime now I can provide a number of useful hints if you need. All I would say now is that using a pump has many advantages, particularly it guarantees excellent erection for us. I am 75 and my wife is 70!

Do not lose heart, with loving support from you, your sex life need not suffer.

 'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.'                    Richard Feynman (1918-1988) Nobel Prize laureate

 

 

User
Posted 09 Oct 2014 at 15:09
Hi Tootie,

My husband was diagnosed last July with advanced prostate cancer and was immediately put on hormone therapy. He was then asked to consider taking part in a clinical drug trial. It was a randomised trial so we were unsure as to which treatment he would be put on. He is now on 2 different hormone treatments. They seem to be working well and his PSA level is now 0.04 compared to 105 when first diagnosed over a year ago. He was told that he would lose his libido but we had no idea exactly how much it would affect him. He has absolutely no desire for sex at all. We have been happily married for over 42 years and I really miss the intimacy. We have had lots of tearful conversations and I did even consider having an affair. We weren't offered much support regarding this problem but I researched it on the Internet and my husband went to see our GP who was unhelpful to say the least! His Urologist eventually put him in touch with the Rep for Soma vacuum pumps. He was excellent and came to the house to demonstrate the device. It was eventually prescribed by our GP on the NHS. It takes a while to get used to it and we are no longer able to have a 'quickie' any more! We tend to set aside a Sunday afternoon!! There are lots of different options depending on what treatment your husband has. I would say don't give up. Persevere like we did and I wish you both all the best for the future.

User
Posted 24 May 2015 at 06:39

hi pam

I am not a marraiage councellor, but you only have two options

when he is home you need to tell me how you feel and make sure he understands, my thoughts are he his just working more to deal with how he is and prob feels very much less of a man for it, he might think/feel the more he is away the less strain on you relationship.

 

or

if things are that bad you may need to sperate for awhile, but from what you post it sounds like you feel that this is already happening

 

you are both going through a really hard time in your life. does hubby have a close friend you can talk to who maybe could have a word with him

hope you can work things out

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User
Posted 24 May 2015 at 08:29
Hi Tootie, like everyone else that has problems with their sexual side of things during treatment I can only say that my wife and myself used to have a great sex life before treatment started and liked to think that we were adventurous then but we had always said to each other that sex is not the be all and end all in our relationship.

I am 15 years older than my wife, I am 65 , we spend every waking and sleeping minute together because we work together as well, we have never had an argument after 18 years together, we feel that we are soul mates as well as lovers and get pleasure from being around each other.

I appreciate not everyone feels the same in a relationship, some need a bit of space/free time but for us it is not necessary.

It worried me in the beginning about not being physical or interested but but they were purely thoughts and considerations, now we still are close but have come to the conclusion that we are lucky to have each other in whatever capacity, through sickness and in health.

Only my views and experience, I hope it helps in some way to maybe just accept it and extract the positives out of the situation

Regards Woody

User
Posted 24 May 2015 at 08:43

Good morning Pam,

Things may not be as bad as you seem to think they are.

Have you considered getting both of you to meet with a Relate Counsellor?

To understand why and how you find yourselves in this position now, there are so many questions to ask about how you and he are at this time, how you were before, have there been any other incidents that may have contributed to the situation?

You say that you have had no physical contact for about 1 year, is that none at all, not even a hug or a cuddle? Did you have hugs a cuddles and sex before. Pecking kiss goodbye or hello when meeting?

How was his recovery post op, what op did he have? Do you work or have something to do with your time when he is away? Sitting home alone waiting must be soul destroying for you. Did you always sit and wait, has there ben a change in your time use?

What job does he do at 70 that makes such increasing demands on him, is he taking on more work deliberately or is he under pressure to do so, does he work for himself? Is he making excuses to be away, if so why?

One good thing from your post that I think offers hope for both of you and your relationship moving forward is that you say he is frustrated by the situation. How is that a good thing?

Well, if you know that he is frustrated, then there is communication and understanding from you and an indication that he is not happy with the situation. If he was happy with the situation then he would not be frustrated, would he?

Maybe, there just needs to be that catalyst that brings you together with some intermediary to enable frank and open discussion about what you are both dealing with?

Don't lose hope. Please consider telephoning Relate, they will talk to you as a couple or you alone, 1 to 1, if you want to go, they can then maybe offer a way forward if you can involve him. Relate worked for me.

atb

dave

PS I do understand that things may not be that simple and there may be more going on than meets the eye, but worth a go?

 

Edited by member 24 May 2015 at 09:03  | Reason: Not specified

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User
Posted 24 May 2015 at 11:59
This seems to be a thread from a year ago that got picked up and re-activated by someone other than Pam.

If you are out there Pam amd still looking for advice and support rest assured you can see it is still here for you.

Best wishes

Xx

Mo

 
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